So scared of dying-Autonomic Neuropathy
 

I just made the connection that I have Autonomic Neuropathy. I searched online and I have every single symptom of Autonomic Neuropathy. The whole body gradually shuts down. Called my Neuro and he said he would call back on Monday. They won't even put me on the schedule yet!

Please, does anyone have this? I also have PN, but Autonomic is a different monster. The death rate is high. I have no support and I cannot even process this. I know I need an "official" diagnosis, but it is pretty clear to me that I have it.

Symptoms: Sometimes can't swallow, heart racing, short of breath, can't eat or get sick, constipated, urinary incontinence at night, heat intolerance, skin really sensitive, exhausted all the time, electricity running through my body, plus all the PN symptoms.

Please, someone help me.

Call the Mayo Clinic! I went to the one in Jacksonville, FL and they found out what was happening with me.

Dear Mommy
 

:smileypray::smileypray:I know it is easy to say not to panick. Having such symptoms would be scarry for anyone. Please get a referral from your neurologist, to get to one of the best teaching hospitals, like John Hopkins: Mayo clinic is where I went for my origional dianosis, when all others failed to find out what was wrong. They do and will get to the bottom of your problems. I will keep you in my thoughts and prayers. ginnie:hug:

I have Autonomic Neuropathy and PN. Dysautonomia-specifically Postural Orthostatic Tachycaria Syndrome. (POTS) Chronic Fatigue Syndrome also. It is VERY hard, I was so ill I could not sit up, barely was able to walk to the bathroom. Then, I got the right supplements from integrative MD's. I slowly healed. The nerves in every part of the body do not work so you get all of the symptoms. It is so scary, but working with diet and supplements to heal the nerves works for me. I am doing SOOOOO MUCH better! My family is SO happy. Hubby, parents etc. It has been a long haul, but I work hard to heal.

I was in a wheelchair for a while, now I can walk great. I use a scooter for really large stores. Otherwise I can feel like fainting.

I know it is scary. Finding great doctors is important. You can go to Dinet.org to the forum also. Learn about dysautonomia. Most people live with it and slowly get better. You have to learn all about how to heal the nerves. Most reg. doctors have no clue how to do this.

Is your blood pressure OK? Sometimes it can get very high or low.

I too have autonomic neuropathy and PN. My autonomic neuropathy is actually quite severe and much worse then my PN. I take numerous medicines to control heart rate, BP, GI problems, etc. I also had to have a pacemaker implanted 8 years ago due to autonomic neuropathy. All that said, I function okay now...not perfect, but functional. There are MANY options for treatment available, so I'm not sure where you read all the misinformation about high death rate etc. You must be careful about your sources online. Best if you go to a neurologist and get a full workup (which may include tilt table, GI emptying, BP & heart rate monitoring and neuro exam) before you start worrying about anything. I feel confident that IF he confirms your diagnosis, he will also put your mind at ease about being able to effectively treat your symptoms.

Re: a type of doctor
 

Investigate a Physiasist. It is spelled correctly. They treat the whole body with suppliments, and for pain. I do feel better with my own conditions. I have RSD of some kind. ginnie:hug:

I have had alot of this with my PN and it gradually got better. NOT a death sentence. Just very scary I know. The fear will create anxiety if you let it. I got anxiety so bad that I didn't know what was coming from what. Try to relax,and get yourself a good GP and a neurologist that specialises in this area.